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Lyme Disease Grips Vineyard; Experts Say Research Needed

Drs. Bela Matyas and Sam Donta agree on at least two points when it comes to dealing with Lyme disease. One, there is not nearly enough money spent on research. Two, the medical response to the disease as a result is as much art as science.

But they are poles apart on so much else. Dr. Matyas, medical director of epidemiology for the state Department of Public Health, adheres to the medical orthodoxy when it comes to chronic Lyme, that is, a continuing active infection for a prolonged period even after treatment.

"That's never been proven to actually occur," he said.

Dr. Donta, who practices in Boston and Falmouth and has a long track record of treating people who have - or believe they have - chronic Lyme, thinks it possible that as many as 20 per cent of people who have been treated for the tick-borne disease may have ongoing symptoms consistent with continuing infections.

Dr. Matyas says that even if a small minority of Lyme cases do become chronic, they are almost impossible to diagnose on the basis of the general symptoms they present.

"It's remarkable, I think, how easy it is to make a diagnosis," he said.

And so here we are at the height of another tick season in the Lyme disease capital of the world, and the same old argument persists. Thirty years after the disease was first identified, it has become the most common vector-borne disease in the United States and it occurs at a higher rate on this Island than anywhere else. And there is still so much about it that is unknown.

But before that debate, first go to what is known and what everybody should know, if they want to stay healthy in tick country.

First, its incidence. In 2005, Martha's Vineyard passed Nantucket as the place with the nation's highest infection rate - 577.2 cases per 100,000 population. The figures for 2006 have not yet been collated, but there is no reason to assume they will be significantly different.

And as for this year, well, Sam Telford 3rd, associate professor of infectious diseases at the Tufts University School of Veterinary Medicine and the preeminent tick researcher, said deer ticks - the species which spreads the disease to humans - appear to be more numerous than usual this spring, due to the cool, wet weather.

That, however, was some weeks ago, before the recent long spell of dry, warm weather. Deer ticks are prone to death by dessication.

"The extent to which we have cool wet weather into July will influence how many nymphs, and even some adult deer ticks, will be around into July. They normally disappear by the end of July, but with the right weather may persist into August," Dr. Telford said.

Donna Enos, the infection control nurse who collates the statistics at Martha's Vineyard Hospital, said it was way too early to say whether this was shaping up as a bad summer. Most cases appear in July, both because of the number of nymph ticks (which are pinhead-sized and therefore hard to spot) and because so many people are out and about in tick habitat.

"But we're starting to see lots of cases coming in. Lots of people with bulls eye rashes," she said.

The rash is the surest sign of a Lyme infection. It appears in about 60 or 70 per cent of cases, usually as a red ring which slowly expands outwards from the site of the tick bite. But it is not always circular, and often it is not there at all. The other symptoms of early Lyme are flu-like fevers, chills, sweats, joint, muscle and headaches.

People can be tested for the presence of antibodies in their blood, but usually doctors will prescribe antibiotics on suspicion.

"We have to go by symptoms this time of the year more than at any other. If you've got a febrile summer illness it raises red flags straight away," Ms. Enos said.

There is good reason to treat the disease on speculation, particularly in the case of summer visitors who may go home to places where doctors are less familiar with Lyme.

Said Vineyard Haven internist Dr. Michael Jacobs: "You've got to realize it could take up to a month for symptoms to develop and it can certainly take a month for antibodies to develop.

"If people become ill after they leave the Vineyard, they should certainly still be thinking Lyme disease."

He continued: "The most important thing to stress is that Lyme is a preventable disease if people do a careful inspection for ticks, especially under the hairline, under the arms, groin, behind the knees, all the crevices and cracks so to speak.

"If hiking in a heavily-infested area, they can wear permethrin on their clothing and put DEET insect repellent on their arms and legs as well.

"Lastly, there is now a way to prevent Lyme. If you treat yourself early, within 72 hours of being bitten, you simply take two doxycycline tablets all at once, you can prevent it. People should be aware of that, and not just pull the tick off and hope that something doesn't happen."

Dr. Jacobs prescribes a short-term dose of doxycycline for everyone who comes in with a tick bite, and usually gives them extra doses for subsequent bites.

"I am very liberal with it," he said.

And that is a real advance; people treated in this way never become symptomatic.

That is the good news. The not-so-good news is that those who already have the rash or other symptoms like joint aches, must still undergo the usual treatment with a course of antibiotics, often for three or four weeks.

The bad news is that for those who are not treated early, the correct treatment remains a matter of medical contention.

Said Mrs. Enos: "We get people that will get tested and find out they had Lyme Disease and never had a symptom in their life."

And that is problematic. Have the immune systems of such people beaten the bacterium without the aid of drugs? Or could the disease be lingering inside them dormant, but not dead?

"I don't think there is any data on what happens with untreated Lyme Disease," said Dr. Jacobs. "But there is the prospect of arthritis, heart problems and neurological problems."

He treats it all as he would early Lyme, with a three to four-week course of antibiotics, but concedes: "They definitely carry some risk of an ongoing infection. Even if they're feeling well."

Which comes to the most difficult category of patient of the lot: those who continue to experience symptoms of illness, even after treatment. The essence of the medical problem is this: there is currently no way of determining if the germ lives on in these people. Doctors have only the subjective experiences of the patient to rely on.

Said Dr. Donta: "Unfortunately, some medical people interpret this as ‘This is not real. We don't believe in chronic Lyme.' About 20 per cent, perhaps more had sequela [lingering symptoms] after treatment. Now, it is true I cannot prove the bacteria are present, but when you put all the information together, the type of symptoms people are having, it fits very nicely with relapsing infections." He continued:

"My concern is that progress is being obstructed by the view that there couldn't possibly be persisting infection and that antibiotics can't work.

"That's not correct. We have compelling evidence that certain antibiotics do work, but we haven't had controlled clinical trials to prove it. The germ itself does not appear to stay in the circulation. It probably goes into a tissue, probably nervous system tissue. The question is where? No real attempts have been made to find it. It is dumbfounding to me the lack of inquiry here."

Dr. Donta has developed his own treatment regime using different antibiotics, administered over a period of months.

"I think I've made a fair amount of progress," he said. "But it needs to be proven."

Dr. Matyas is not hostile, but remains skeptical.

"The big complication [with alleged chronic Lyme] is the symptoms themselves," he said.

"There is no disease that impacts the body heavily that doesn't cause depression, impression, insomnia, mood change and fatigue. If a person shows up with just those, the doctor is faced with literally thousands of possible explanations.

"There are probably some people who truly have those symptoms due to Lyme disease. The problem is finding them against the thousands of other potential causes."

And even if they are due to Lyme, they are not necessarily due to active Lyme. Even if a patient is treated promptly on showing symptoms, after effects could linger several months, and if not treated promptly, for several years.

"There are lots of theories about this," Dr. Matyas said. "One is that it is just a lingering effect. Another is an autoimmune reaction, that by being infected you've somehow stimulated your immune system to react against you. Another is that it's an active infection." He added:

"It's important to distinguish, because antibiotic treatment is appropriate for one of the explanations, but is exactly the worst thing you could do for another. If you believe it's autoimmune you probably want to treat it with steroids and not expose you to the risks of the antibiotic. If you believe however, that it's active illness, the last thing you want to give is steroids, because steroids give the germ an advantage by suppressing your immune system."

He concurred that the problem would benefit greatly from research dollars that have not been forthcoming:

"There is no question this is a very important public health issue. It affects a lot of people and it causes a lot of disability. For whatever reason at the federal level it hasn't really made it onto the agenda. It should."